Transitioning from a Pediatric GI patient to an adult

I know many patients and caregivers who struggle with the thought of transitioning from being a pediatric patient to needing to be on a regular adult GI floor. The change of doctors is often anxiety provoking since you build a relationship with a doctor who knows your complex medical history, so the idea of having to start all over again with a new physician can be frightening. There is so much unknown with inflammatory bowel disease as it is so I took a lot of comfort in knowing that whenever I would go into the hospital, I would have to go through a procedure I had been through numerous times, meet with these familiar doctors/nurses on the floor, come up with a treatment plan by a certain day and so on.

Clinging to the familiar is completely understandable given that Crohns disease and ulcerative colitis doesn’t allow for much predictability or control in our lives. We want to feel as safe as we can and trust that whoever is taking care of us knows what is best for YOU; not all IBD patients as a whole since no one is the same, but that you are in the hands of someone who understands your personal medical history.

To be very honest, the transition from being a pediatric patient to adult is foggy. I was on the Mt. Sinai pediatric floor from the ages of 13 until I was 18. At the hospital I was in, they allowed patients to stay on the pediatric floor until the age of 21 but since I was already under the care of an adult colo rectal surgeon at the time and needed to be seen by a gastroenterologist that he worked more closely with in conjunction with an infectious disease doctor, I was moved onto the adult floor sooner.

All I cared about when making this transition was that my dad would be able to stay with me overnight. That was the one thing I was only guaranteed on the pediatric floor and something that utterly petrified me when I “graduated.” I was comfortable with my doctor since he had two years of treating me as a pediatric patient (even though he was an adult doctor) so that switch wasn’t hard for me.

I remember the first time I was on the adult floor, the nurses and staff felt badly for me. I was no longer the oldest child but rather the youngest adult. I was looked at differently. I was looked at with pity and while I didn’t want anyone to feel badly for me, I was glad they did in a way because I thought it would make them more compassionate. And it did.

I preferred the adult floor because the pediatric floor was nerve wracking to me. There was one young boy who was waiting for an intestinal transplant of which I was wondering why I couldn’t have that. I remember he was there for so long. I hated walking in the hallway because as a teenager, I didn’t want to see young children stuck in the hospital like I was. I couldn’t rationalize that and didn’t understand why they were there. I didn’t like seeing parents and family members being so upset because their child, who should have been out having fun, was lying in a hospital bed too sick to move. One girl who had a liver condition was completely yellow and I wanted nothing to do with it. I started asking my mom and a nurse that was in her room about it and it was too much information for me. As cold as that sounds, I didn’t want to know what else people were dealing with and it was more out in the open on a pediatric floor.

The adult GI floor was different because there were no little kids running around, no one popping their head in to see if I wanted to play games, needed help with homework, etc and I preferred that. I looked at the hospital as something I needed to get through in order to get home and feel better. I didn’t want to socialize. I didn’t want to know what was going on around me. I couldn’t emotionally handle it. I just wanted to get out of there and be home. I started writing in journals when I became sick and when I was too weak to write on my own, I would dictate things for my mom to write in there for me so I would remember it. That’s all I wanted to focus on- me, my parents, and my brother. No one else.

I do recommend starting to develop a relationship with an adult GI before you are turned away as a pediatric patient. This will allow both you as the patient and your caregiver(s) to feel like they have someone on their team when the transition occurs. It won’t be a stranger who you need to call at 2am in an emergency; he/she will be established as your doctor before any kind of emergency situation occurs.

Being a pediatric patient is definitely different and I understand those people and caregivers who are nervous about what will happen when it is time for them to make the switch. But, believe me when I tell you, you will adjust to the new scenery, routine, and people. Being a patient is hard and awful, whether you are an adult or a child. Looking at the hospital as a place to focus on you and only you, do whatever you can to get yourself stable and get home is how I always viewed being inpatient.

About Marisa Lauren Troy

I am a 28 year old girl who was diagnosed with ulcerative colitis at the age of 13, and since had 14 major operations. I have been in and out of the hospital due to many complications, blockages, and usual UC symptoms.